We talk about invisible diseases, and there are so many. These are the illnesses that are not obvious from the outside. My son would be using the electric shopping cart at the market and someone would tell him he was taking it from someone who needs it, or park in a handicap space and be told there was nothing wrong with him and needed the exercise if he would park down the aisle. On occasion, there was the triage nurse that looked at him and said that he looked fine and he was at the ER as a drug-seeker. And the time he was in the hospital and I wanted a referral to a doctor outside of our insurance to consult and I was told by the woman in the insurance department that I was trying to save my son’s life, and was told that I was being dramatic and denied the referral after going to his room and looking at him. These people had no idea about his many surgeries, his permanent G-tube that had been placed for three years, his constant pain from adhesions and having been placed inappropriately on a gurney for a surgery, that just a few years ago he weighed 230 lbs and at that time was 107 lb., that he hasn’t swallowed food in years, or that he goes sleepless every night due to his severe asthma and narcolepsy.
I do my best to bring awareness to invisible diseases because it is difficult to hear judgements constantly. Well, I have an invisible illness also. It is called POTS. Here is an article that gives some facts about this syndrome. I found it on Patients Count at: http://patientscount.org
POTS is much more than tachycardia
39 POTS patients at Baylor Medical Center were asked to report their symptoms, and here’s how it came out:
Symptoms reported by POTS patients:
Lightheadedness with standing 87%
Sensitivity to hot or cold temperature 87%
Concentration difficulty 77%
Facial flushing or rash 77%
Hands change color in the cold 74%
Morning exacerbation of symptoms 69%
Blurry vision 69%
Muscle cramping 69%
Lightheadedness with sitting 64%
Breathing difficulty 64%
Joint pain 62%
Word-finding difficulty 59%
Medication sensitivity 56%
Leg pain 56%
Memory difficulty 54%
Early-morning awakenings 51%
Night time awakenings 46%
Irritable bowel symptoms 46%
Loose joints/double-jointed 44%
Susceptibility to cold or infections 44%
Swallowing difficulty 41%
Iron deficiency anemia 39%
Lightheadedness with laying 36%
>2 medication allergies 33%
Hearing loss 28%
Family history of low blood pressure 28%
You probably wouldn’t be able to see many of these symptoms if I was to walk in a room, but I assure you I am having at least one to a few at that time. Thank you for reading.
I came across this article this morning. Well, not an article, but a question and answer in Aha! Parenting.com magazine by Dr. Laura Markham. She has given some wise advice to a mother struggling with a child with a chronic illness. Her advice is not only how to help the little girl, but also for the parent caring for her. There are some tools there that can be relationship-saving and possibly life-saving. In the discussion area, Sheri Brisson shares some of her ailments as a young girl. She has written a journal for children that find themselves in the same struggles. You can find this journal at digging deep.org. I think this is an amazing tool for children. I hope you find it as helpful as I did.
My heart is hurting for my little girl. She is 11 years old. About a year ago she was diagnosed with Juvenile Arthritis after many months of illness.
Even with treatment and medication, she still has flare ups and pain in her joints. The arthritis affects her hips, knees and elbow mostly. She also tires more easily than other children. Some weeks she feels okay and can participate in normal activities, but some days she can barely get out of bed or walk without assistance.
I really could use some advice with how to help her deal emotionally with her illness. She cries and screams that it is unfair that she has arthritis, has to take medicine every day, get shots every week and go to the doctor all the time. She keeps saying that she just wants to be a normal kid.
The medicine that she takes also contributes to her mood swings. She gets so angry and upset that we have a great deal of trouble calming her down. She lashes out at me and my husband and she is just so angry. Before getting sick she was the happiest, most cheerful child ever. She has told me that she hates being different and that none of the girls in her new class will play with her. She thinks that it is because she is limping from her hip hurting.
The other issue we are facing is if we should pull her from cheerleading. That is the one activity that she truly loves. She has been in a cheer program for 5 years – since before she ever was sick. She enjoys everything about cheerleading. When she is hurting, she still insists on going to practice even if she has to sit off to the side and just learn the cheers. Plus she has known the girls on her team since before she was sick, so they do not treat her any differently.
Her coaches are really understanding when she is not feeling well or in pain, but the program is getting more and more intense as she gets older. My husband feels like it is too much on her and we should pull her. I know that it might be too much for her right now, but she is miserable at school and mad at the world, how can I take away the one thing that she truly loves?
Thank you so much.
What a heart-breaking situation for your daughter — and for you.
Naturally, your little girl is angry. First, she’s in pain, and that makes anyone miserable, frustrated, and ready to lash out. Second, she can’t do the things she wants to do, that most children can take for granted. Third, her whole life is medical-ized and this illness dominates her life. Finally, she feels different from other kids, just at an age when children get so worried about being accepted. This would be a lot for anyone to handle, let alone an 11-year-old.
Some questions about her medication:
Are the doctors aware that you think it causes mood swings? Anything they recommend about that?
Does the medicine provide adequate pain relief, and if not, is there an option for you and your daughter to learn hypnosis to manage the pain? Hypnosis has no side effects, and is very empowering.
How to help her deal emotionally with her illness?
1. Let her cry and scream. It IS unfair. She has every right to be upset. When she lashes out, stay with her and empathize with how upset she is. Of course don’t let her hurt you, but stay as kind and calm as you can and keep an emotional bridge with your soothing voice. If you accept her rage, she will go under it to her grief, for the life she has lost and will never have. That grief is huge because the loss is huge. I know it is hard to see your child grieve and rage, and part of you just wants your happy girl back. But before she can adjust, she has to accept this situation, and that means grieving. So when she’s upset, your job is to accept her feelings and empathize about how mad — and how sad– she is.
2. Give her other outlets to deal with her grief and rage. Art is a wonderful way for children to process emotion. Pounding clay is always therapeutic. Or encourage your daughter to “draw” her upset on days when she is grumpy. It doesn’t have to look like anything to be therapeutic. Just nod and say “I see you used a lot of blue today” or “I see a lot of energy in this drawing” or “Tell me about this picture.” Then listen, empathize, and hug her. You might put dates on her artwork, and put it all in a big folder or portfolio. That shows her you value the art, and see value in her self-expression, even when it’s about pain.
3. In order to stay calm with your daughter when she is upset, it’s important that you have a way to process your own pain about her situation. Journal, cry, talk to a friend or counselor to support yourself through this hard time. Your daughter has a lot of crying to do, and she needs you to have worked through your own emotions enough that you can deal with the rawness of her pain. Otherwise, it would be natural for you to find her pain unbearable and to give her the message to shut it down. But repression won’t work here; she needs to express it to a brave, compassionate witness–you!
4. Stay positive. Empathize with your daughter’s grief and rage, but keep your expectations high. Kids who have a “poor me” attitude are cultivating a chip on their shoulder and a sense of powerlessness. That’s not what you want, obviously. Instead, empathize with her pain but hold the expectation that she is a unique individual with much to contribute to the world Tell her that everyone has trials, hers just came earlier than most, and you know she is strong enough to make it through even this.
So expect her to do well academically and to find other passions, such as art, music, writing, reading, etc. Expect her to be a kind and compassionate person, even if sometimes she can’t be because she is just too pained or angry. Expect her to pull her weight in the family by doing chores (just like her siblings, if she has any), and find chores she can handle. (If she does have siblings, be sure to spend one on one time with them every day, as well as with her.)
Your daughter is trying to make sense of a very unfair situation. You can completely validate that, even while understanding that your daughter has unique gifts in spite of her burden, and maybe even because of her burden. If that makes sense to you, it will communicate itself to your daughter over time — not in a way that invalidates her pain, but in a way that makes sense of it. Even if you are not a spiritual person, you can certainly communicate your belief that we can all lead meaningful lives that make a contribution, even those of us with a chronic illness.
5. Books are a great way to help children process emotion. Keeping A Secret: A Story About Juvenile Rheumatoid Arthritis by Elizabeth Murphy-Melas is one book about Juvenile Arthritis, but any books about kids struggling with illness, with being different, and with making friends will touch a chord and be helpful to her. Expect her to have big feelings about these books as she reads them, see it as an opportunity for a great discussion, or maybe a good cry. The more your little girl has opportunities to feel and express her big feelings, the more quickly she will get past them.
6. Play physical games with your daughter. One of the issues she is grappling with right now is that she doesn’t feel physically capable. She needs an antidote to that. Wrestle with her and let her win. Put your hands against hers, let her push at you, push you across the room while you resist (a bit) and even push you over. A great book that describes how to do this is Playful Parenting by Lawrence Cohen. He thinks it is important for all girls to gain a sense of their physical power, and for a child with physical issues it’s even more imperative.
7. Your daughter needs a friend, and she needs your support to make one. Talk to the teacher. Is it true that the other girls won’t play with her because she is limping? Does the teacher have any ideas about a child your daughter could become friends with? Can the teacher pair her with another girl for a special project, and you can build on that to invite the girl over to work on it, go for ice cream, etc? What does the teacher suggest?
It is painful to be different, and maybe especially so at the age of 11, so finding ways to promote friendships needs to be at the top of your family list. What happened to her friends from before her illness? Is there a club at school where she could make friends with the same interests?
Your daughter will probably need your help to come up with some lines to “explain” her limping etc. She may also need to participate in a social skills group so that she has the skills to make good connections.
8. Encourage her passions. Your daughter needs something in her life that she loves, and that makes her happy. It sounds like so far, that thing has been cheerleading. I understand why her dad feels it is too much for her, but I think it would be a mistake to pull her from it. She needs it right now. Even if she just sits on the side and learns the cheers, the bonds with the other kids are very important to her right now.
BUT she will become more and more frustrated with it, almost certainly. And at some point, she will most likely tell you she is ready to stop. Let her make that call. If you can work with her in the meantime to discover another passion, it would be very helpful to her. There are many passions that don’t depend on physical strength. Your daughter is being sent in another direction. Help her learn to listen to those messages.
I hope these suggestions are helpful. You have a lot of heavy lifting to help your daughter right now. Hang in there. Remember that sometimes our greatest tragedies are also our greatest gifts, in ways we could never have foreseen. I wish you and your family every blessing.